Walk to End Lupus Now 2013

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This is the fifth year our community (cincinnati area) is having a lupus walk. I have walked it each year since inception. Well, when I say “walk” I mean that I am a registered walker who, depending on how I feel the day of the walk, either walks or mans a table. As most of you know, lupus is unpredictable. I never know if I will walk or not. I do raise money though.

If your community has a walk then by all means jump right in and have fun!!! It really is a lot of fun and so much good comes from it as well!!

One of the sweetest things about the walk is that my grandchildren get involved. The first year, I had four of them walking. One of them, Audrey, has walked since she was three years old!! She not only walks, but raises a lot of money too! I am so thankful that my grandchildren have such loving hearts!

So, I am going to repeat a previous post of mine called “Why I Walk”. It says it all. I hope you enjoy it.

I walk for my family, my children and grandchildren. They are at risk of developing Lupus because of me. I walk so they will not have to suffer and feel the pain of joints hurting and rashes appearing and organs inflamed. I walk for their future being pain free and healthy. I do not want this disease to impact them as it has me.

I walk for those who are unable to walk the walk anymore. They are fighting the best they can to survive each day with a smile on their face and joy in their heart. They do not take each day for granted but enjoy each day to the fullest because they have learned to appreciate each day they are given to survive. They are the warriors in this disease.

I walk for those who have passed on. This year alone, I have known of at least ten people who this disease has overtaken. There are many more that I do not know, but the sad fact is that this disease will consume many more loving people before their time. Those who have passed on are the inspiration to me to keep going, and not let the disease win if I can help it.

I walk for those not yet diagnosed. So many times it takes YEARS before a diagnosis can be made. With more awareness and assistance, we hope to cut this time down so patients can get the life saving treatment they need sooner rather than later. In some, this difference can mean life or death. It is vital to shorten this time!

I walk for those in such pain that they find daily living a challenge. Why must we feel bad when asking medical professionals for help in pain management? I truly believe that if more men had this disease, pain management would not be an issue. More women have this disease and as such, pain management can de a daunting challenge. We deserve to live as pain free as we can. We are not asking for something to get high. We are asking for medications that can help us to function on a daily basis as normally as possible. Why do we feel like drug addicts when we ask for help? Medical professionals need to understand that this is a chronic, incurable disease that can come and go and when we are in need of help, please give us the help we need. It is a small thing to ask for yet it is often a challenge because of the laws and the feelings of each doctor.

Finally, I walk so that others can be educated on this disease. Awareness is a key to funding, earlier diagnosis, treatment, and research. The more people realize that lupus is out here and more prolific that many diseases that have a higher profile, the more help we will get. Please take a few moments of your time and read about lupus. Talk about lupus. Join the LFA. Become proactive. For those of us with lupus, we need your help to get the word out. The normal people out there are the ones who can take the ball and run with it. They have the energy and time to be able to help those of us who can’t. Please go to

http://www.lfa.org and learn more about it.

If we can help just one person, will that not make everyone feel better? Join our cause and see what one person can do. The walk is just the tip of the iceberg.

On a personal note, I am proud of my granddaughter, Audrey, who has walked the walk since she was 3 years old. She WALKS and has raised money each year to help her meemaw. That, my friends, is love.

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9 thoughts on “Walk to End Lupus Now 2013

  1. I came across your blog today and I really liked this post. I was diagnosed with SLE about 4 years ago and it has been a constant battle. Sometimes with this disease I feel isolated from others and it feels good to exchange experiences with other fellow Lupies. It feels good to know that you are not alone in this fight for survival. The love for my family and friends is what motivates me to keep on fighting this dreadful disease and I am grateful for their constant support and love.

    • Hi Diana and welcome! You are definitely not alone! There are so many of us out here! Feel free to check out other posts and comment away!

    • Thanks for your lovely comment! I know there are dark days and light days and it is my determination to keep more light than dark ones. We all help each other in this regard. ~Jen

  2. Dee

    I just ran across your blog today and BOY!!! WHAT A RELIEF to find that I’m not as alone as I thought. I was diagnosed with Lupus about a year ago and I’m as much in the dark as I was when this weird journey began.
    I had gone through years of fatigue, aches and pains, headaches, etc. I started gaining weight because of inactivity. My doctor(s) kept diagnosing DEPRESSION and gave me prescriptions for anti-depressants. “Of course, I’m depressed!” I kept saying – “I hurt all over and I’m FAT – wouldn’t you be depressed?!” More prescriptions, no help.
    One doctor DID find that my thyroid wasn’t acting right and put my on levothyroxine. At least then I stopped gaining weight. No weight loss, but no added pounds. I bought a treadmill and started dieting. The problem was, I not only didn’t have the energy to walk, I didn’t have an appetite enough to diet. In other words, being on ANY diet meant I had to eat MORE than I generally consumed each day. So dieting equaled more food which added up to weight gain.
    Some days, all I could do was sit in my recliner – changing positions every few minutes because my hip pain made sitting very uncomfortable. Even lying in bed was a chore – sometimes it was one hip or the other that hurt, or maybe it was a shoulder or elbow. It was ALWAYS something. I just KNEW that I was turning into a complete neurotic hypochondriac!! I had never felt so helpless and hopeless.
    Finally, when I was diagnosed, I was sent to a rheumatologist to confirm the findings. AT LAST! I finally had an answer – I was put on Hydroxychloroquine (a medication for Malaria). This is the craziest disease I ever heard of. Finding out that Lupus is the answer only means that now there’s MORE questions. Science is still trying to figure this “thing” out.
    Now, I’ve set an appointment with my rheumatologist to ask about the constant itching that I’m going through. It started a few months ago – first, my scalp itched (no, I don’t have dandruff), then my ankles, then my back side. As of today, there’s hardly any place on my body that doesn’t show the signs of my constant “clawing”. Knowing my doctor, he’s probably going to tell me that this isn’t Lupus that’s causing the itching. If he can’t help, then I guess I’ll go back to my GP or try a dermatologist.
    I know I’m rambling right now, but I’m just so relieved to find others out there that can relate – maybe just a little bit. Thanks for being there!

    • Welcome Dee and glad you found this blog. I well remember when I was first diagnosed. Way back then, the life expectancy was ten years! Now it is a lot longer, which means learning and educating ourselves so we are aware of how this ” great imitator” disease affects us. No two patients are alike, but we have periods where we can encourage others from our own experiences.

      I have been on plaquenil forever it seems. It does help so give it a try for sure.

      As for the itching, I have written several posts about the itching. I get it at times myself and the jury is out among doctors as to if lupus causes it or not.

      Please feel free to roam around checking out different posts and learn more. The best thing to know is that you are not alone!! Thanks for finding us and I hope in some small way this blog can give you answers. ~Jen

    • Tina Lee

      Thank you…I totally understand what your going threw. I never know from one day to the next if I will be able to get out of bed. LUPUS IS SO UNPREDICTABLE AND WORST DISEASE.

      • Thank you Tina! I make the plans I do and always say they are subject to change without notice. It is frustrating but it is my reality. I appreciate your comment!! ~Jen

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